"Some Repetitive ALS Reflections"

"Some Repetitive ALS Reflections"

Some friends want me to blog more often about what it's like on a daily basis to deal with the challenge of ALS (not more sermons!). Quite honestly, it's becoming easier to rewrite sermons than to think about my health realities. But, I'm going to give it a try.

If you've not heard any of us PALS (People with ALS) mention it before, please hear it this time: ALS has a way of randomly moving through our bodies. I am so amazed at how differently it impacts each of us. Some of us have no difficulty speaking after several years of ALS randomly choosing neurons to destroy. Others of us can speak but we often have to face that people believe we're drunk. Others of us have had to go to the adaptive assistive communication devices within a year or two of the disease starting through our bodies. Some never reach that point because ALS takes their lives within a year of diagnosis.

Then there are some who first notice it when they have difficulty gripping or lifting things. I first noticed it in my legs - not painful, but exhaustion was the word I most commonly used after short walks or stints of work. I also began to notice having difficulty catching my breath while trying to sing during worship services. I found myself choosing to sit down during most of the service and having other folks lead everything in the worship service except for the sermon. This was all developing nearly a year before diagnosis.

(Right now, I'm in need of pausing for awhile because my fingers and hands are shaking uncontrollably - so, more about that later.)

You get my point so far? We're all dealing with different stuff at different times. I no longer wonder so much about why the researchers are having so much difficulty coming up with a way to treat. They're certainly closer with what's happening to cause the deterioration of our bodies, just not the why it's happening nor any cures or treatments.

So, for those of you who are into my personal physical realities, I'll now launch into a recounting of a few of the things with which this PALS is dealing. The most notable cause of my no longer trusting my ability to stand in order to transfer from my power wheelchair to the bed, toilet, or shower chair appears to be the weakening of my right quad muscle area. I am having difficulty lifting my right leg up from a sitting or laying down position - a sort of marching exercise the physical therapists have recommended I try. The interesting aspect of that is the toes on my LEFT foot are curling under and the ones on my right foot are still fairly normal. This is not painful, but it bothers me and I ask every time someone is helping me for them to wiggle those toes. There are times when I can get to them myself, but most of the time it takes too much out of me to contort the way I have to in order to reach them.

I know most of you know that the functionless diaphragm and apparently area compensating muscles are the culprits for further changes in my ability to carry on conversations and the quantity of food I can eat at one sitting. I'm still, luckily, able to eat almost anything I want, but I get full even faster than a few months ago. I'm allowed and encouraged to snack and keep Dorothy busy with extra feedings. Weight loss is one of the big concerns for PALS. I lost several pounds before my June ALS clinic appointment  (which we now believe was the result of a drug interaction) but gained a couple back for my September clinic appointment. I now am on an A-vap machine called a trilogy about 16 - 20 hours a day, depending on how much I've tried to talk or when I've had a shower. FYI - a trilogy is described as sort of a non-invasive respirator. I had asked the pulmonary doctor and respiratory therapist if there was something I could use that would allow me to remain mobile without resorting to a tracheotomy. The trilogy was recommended. It has a 6-hour battery life which allows us to continue to go.

Another continuing to worsen situation which influences what I order when we go out to eat are my wrists, fingers, and arm muscles. When I am able, I choose food I can eat with my fingers because silverware use is both awkward and energy depleting - I'm enjoying more potato skins and boneless wings as well as ribs instead of sandwiches, hardly a negative since these are some of my favorite foods anyway! Stromboli and pizzas as well as nachos have also found their way to my personalized menu ordering choices.

Another frustrating aspect of the weakening hand area muscles is that my ability to type is becoming more and more compromised. While I'm learning to use an eye-gaze system which will allow me to continue writing and using the internet, my communicating will be greatly slowed - believe me, it's impressive technology to blink one's eyes and thus have a computer type and speak for me, but it will be at a drastically reduced speed. For the single male who had the privilege of learning to type with about 20 female classmates during a summer early in high school and who was prideful enough to try and type as fast and accurate as them (I wasn't successful - they were all faster and more accurate than me), the thought of not being able to type with my fingers anymore is more than a little disheartening.

Let me move toward closing this health and life update by sharing a couple of things that create negative emotions in me. When I see people jogging or riding a bike with the obvious intention of staying in shape whether it is an act of labor or pure enjoyment of being active, I must admit some jealousy and self-pity. I miss pushing my body - testing its limits - enjoying the interaction of nature and the physical interaction with my body - and yes, competing.

What bothers me the most though, is not being able to be intimate with Dorothy conversationally or physically. Oh, I can whisper or have an app on my iPad speak for me, and I can hold her hand and give her a short kiss, but anything more is too exhausting. We miss talking about the things going on in our lives and the lives of our family and friends. We miss planning things together, being with other people for conversation or cards or meals out. Don't get me wrong, we appreciate the time we have together, feel very fortunate to have been able to do the things we've been able to do the last few years, and very blessed to have lived the lives together we have over the years. One of the mantras we've used these last three years is: "Thank goodness we like each other!"

Blessings on you all for your continued support and encouragement!

(By the way, I had trouble getting back at this because - wait for it - THE BROWNS WON!!! My stomach was all knotted up just like I used to get before a game when in high school and college! Sheesh, I don't need that, Browns! Oh, and the Indians had a good weekend as well, and the Buckeyes? Well, was that really a game?)